Updated: Oct. 28, 2019 – Originally Published: November 5, 2014
“I’m sad because my legs don’t work so good. I can’t run fast like Jake. My legs don’t work.”
The car fell into a heavy silence, the kind that follows a bombshell announcement, where all you can hear is your own heartbeat racing in your ears, followed by the air slowly escaping your lungs – the breath you’ve been holding since those heartbreaking words left his lips.
Someone should step up. Someone should reassure him that he’s perfect, that we knew challenges would come and that we would navigate them together. Isn’t anyone going to say something? Because I’m struggling to keep the sob that’s building in my throat at bay ever since those words tumbled from his sweet little mouth, so full of sorrow.
But it’s just me in the car with him. And Jake. I’m meant to comfort him, to tell him… what am I even supposed to say? That it will be alright? That it’s tough? That I’m sorry?
I thought we had more time.
I thought we wouldn’t be having this conversation just yet, that at four years old, this incredible boy – my precious son who learned just last week that he is indeed a boy, who can remember my name but still struggles with his dad’s, who thinks the thing he poops with is called his “tushie” and that the thing he pees with is also a “tushie” – I thought we had more time.
More time for him to wander through life blissfully unaware of his Cerebral Palsy, more time before he confronted the unfairness that fate or genetics – or maybe my inconsistent prenatal vitamin intake – dealt him.
We often told ourselves that at least he didn’t realize he was different. At least he didn’t know that while most kids breeze through their days, he has to work incredibly hard just to keep up, going through eight hours of therapy each week. Thank goodness, we thought, that he doesn’t know just how different his reality is.
But he knows now. It became glaringly clear during our drive to preschool this morning when Jake mentioned that Owen didn’t look so good. I glanced up at him in the rearview mirror, half-expecting to see a ghostly shade of green, but Owen looked fine. I guessed he was still upset about being told he couldn’t wear his superhero watch to school.
Seeing an opening for some good communication, I suggested Jake ask him what was wrong.
“Owey, what’s wrong?” he asked gently.
“I’m sad,” Owen replied.
“Why are you sad?” Jake continued.
“I’m sad because my legs don’t work so good. I can’t run fast like Jake.”
I think I gasped. It was quiet, but it happened.
And then Jake came to the rescue. This five-year-old who knows – oh, how she knows more than she ever should – jumped in with the best pep talk I’ve ever heard.
“No, Owey, you’re going to be really fast one day! You can borrow my sneakers when you’re bigger – even though they’re pink – because they light up, and that makes people really fast! And you should ask Daddy for help with your running skills. Daddy’s really good at that stuff. I bet you’ll even beat me one day!” she said, full of enthusiasm.
Telling her little brother that he would one day outrun her was a supreme act of generosity for my girl. She, too, faces her own struggles with arthritis and sensory issues that challenge both her strength and confidence, yet she treasures her speed and takes pride in it.
And she just gave it to him. Without hesitation or reservation. She gave him that.
I thought she had more time.
More time before she had to step into the role of his supporter and defender, explaining things to him and for him. She’s only five! She’s not even in Kindergarten yet, and somehow, she just knew he needed her encouragement.
As we arrived at his school, I dropped him off, letting his therapist know he was feeling a bit down. He kissed me goodbye, his clear blue-green eyes – the ones that always draw comments – looked downcast, devoid of their usual sparkle. It was as if he understood something profound, and it hurt.
It’s that moment when you realize something you can never forget.
It’s when you see that look in your child’s eyes that you can’t un-see, or when you hear that deep sorrow in his voice that stays with you forever.
It’s unbearable. My heart aches for him – for his little heart that has now awakened to this difficult truth.
After dropping Jake off, I turned to Owen at the first red light, wanting to express how proud I was of him. How he showed such kindness and love towards his brother in that moment.
Then I called my partner, Mike, as I left the school parking lot, finally allowing the tears that had been waiting to spill over. I wondered aloud what we would do, how we would explain this reality to Owen.
All morning, I have cried on and off, reflecting on our conversation and the tough discussions that are sure to follow. And I still have no clue what to tell him. Some things can’t be fixed with just a hug or a kiss. There are things that leave you speechless, and other things that I want to whisper to him, wanting him to know how sorry I am that this happened to him – that he didn’t deserve this. I wish it had been me instead. But I also want him to understand that I’m not sorry – not for a single moment that he is my son and that I wouldn’t trade him for anyone in the world, that he has made me proud every single day for the last four years, even without realizing why.
But he knows now.
I thought we had more time.
In Summary
This heartfelt narrative explores the emotional turmoil of a parent grappling with their child’s realization of his Cerebral Palsy. As the young boy navigates feelings of sadness and awareness, his sister steps in with a touching display of love and support. Their bond shines through, reminding us of the unexpected challenges and powerful moments that come with parenting.
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